I’m now half way through my fourth cycle of induction chemo, which as I’ve posted here is my first cycle on Velcade/Dexamethasone/Thalidomide (whereas I was previously on Velcade/Dexamethasone/Cyclophosphamide). Whilst I was on the CVD combination I don’t think I noticed any specific effects from the Velcade or the cyclophosphamide, but there was certainly the boost from the dexamethasone on the Fridays and Saturdays when I take it, with an associated comedown on the Sunday and Monday afterwards. In particular, I didn’t sleep much on Friday and Saturday nights (perhaps 4 or 5 hours at most, though I gather that for a 20mg dose of dexamethasone, that’s not bad at all).

Conversely Thalidomide is a sedative (which was one of the uses for which it was originally doled out in the late 1950s before its dangers for developing foetuses were discovered). For this reason I take it at night, perhaps an hour before I go to bed. Or, quite commonly, about 2 hours before I go to bed when Andrea finds me asleep on the sofa in front of the TV, because I’ve popped my dozy pill and got too comfortable…

So I was intrigued to see what the outcome would be of the battle between the thalidomide and the dexamethasone on a Friday and Saturday. Would the dexamethasone still be enough to keep me awake, or would the knock out of the thalidomide counteract it and let me get a more normal couple of nights’ sleep? Well I can safely report that it’s dexamethasone 1 : thalidomide 0. Friday and Saturday nights seem to be the same as ever, i.e. I have to consciously make the effort to go to bed, or I’d still be doing stuff at 3am.

So last night with a few hours to kill after the others had gone to bed I set about some Halloween pumpkin (or “kumpkin” as my nephew is stuck on saying) carving. I think that these two came out the best…

Continuing the trend of a rollercoaster experience of good running days and bad running days, I was pleased to have a good ‘un at lunchtime today. I suspect this was at least in part due to the fact that a Friday is a dexamethasone (steriod) day for me, which is good for a pick-me-up (or “cheating” as my sympathetic running partner put it). It may have also just been that the stars were in the right alignment and the wind was in the right direction – I’ve not really worked out how to predict when it’s going to feel easier and when harder.

Anyway it was my usual ~5 miler from work at lunchtime, out over the Northam bridge over the River Itchen and back over the Itchen bridge. I even managed to pull away from my running partner as we climbed back over the tall arch of the Itchen Bridge and only extended the lead in the last 1/2 mile back to the office. Great feeling – I always used to be able to find more in the tank when I needed it, and it’s been a sobering experience to lose that ability of late. Really looking forward to getting through all this treatment and working on getting some more fitness back next year…

On Wednesday this week I had an appointment at the National Amyloidosis Centre at the Royal Free Hospital in London. This was essentially just a routine check-up to see how I am getting on after 3 cycles of induction chemo. This was just a one day appointment for a chat to the consultant and the clinical research nurse, so without the SAP scan that I had last time I was there (but which I will have again when I go back in January). The main aspect for me to discuss was the switch to Velcade/Dexamethasone/Thalidomide from Velcade/Dexamethasone/Cyclophosphamide from my fourth cycle. The London consultant agreed that this seems to be the right thing to do at this stage (good to hear) on the basis that my lambda light chain levels appear to still be holding a little high. I say “appear” because the consultant suggested that there may be some kind of aggregation of the light chains in my samples going on, which is adding to the difficulties which the assay has in accurately determining the level. “Adding” because the assay is in any regard not very accurate at high light chain levels. Anyway, good to hear that this aggregation may be giving an artificially high reading so perhaps the levels (~10k mg/l) being measured are actually somewhat lower than that already. The consultant also commented that the electrophoresis test that they also do (which is an older test which only gives a blunter measure of the presence of elevated light chain levels) showed a positive result in my first samples which has already disappeared, providing some evidence of a fall in the levels thus far. So, roll on the positive effects of the Thalodomide… We also discussed the (relatively low) possibility of some peripheral neuropathy (numbness in finger/toe tips), though the fact that I’ve not had this so far on the Velcade, or in these first two weeks on Thalidomide, is a positive sign, so hopefully I can avoid that side-effect entirely.

On Thursday I had a follow-up appointment with the consultant cardiologist at Southampton General Hospital. I was keen to hear what he had to say in the light of the mixed experiences I’ve been having with running, in particular whether this was likely to be due to amyloid formation in my heart. In fact it seems that whilst this might be having a minor underlying effect, he still thinks that I’m in pretty good physical condition and although the images he’s seen (for example from the MRI scan that I had in May) are “consistent with” some amyloid formation, it seems that the variation that I’ve had are probably more likely to be attributable to the colourful combinations of drugs (prescription) that I’ve been taking and general variation in condition. He was certainly happy enough that we booked my next appointment for a year’s time…

I noticed that in the last post that the emailed version of the post only had a still shot of me giving myself the Clexane injection. If you want to see the video, you’ll need to follow this link to watch the video.

Yesterday I started my 4th cycle of chemo, and as explained here this is the first day of switching from a CVD to a VTD combination of chemo drugs. My visit to the hospital to have the intravenous Velcade administered wasn’t administratively very well planned, as I had my appointment at 9am (great I thought, I’ll be at work by 10am), but it turns out that the oncology pharmacy doesn’t open until 9am on Friday, nor do they start making up my Velcade until the day of my appointment…. Some dots not joined up there I feel. The nurse also demonstrated (on a sponge) how the Clexane injections have to be done, which looked pretty simple (on the sponge).

Back at the oncology pharmacy, I also picked up my new set of drugs for this cycle, including the pre-prepared syringes of Clexane and a sharps bucket for them to go into. Here’s the full spread:

So in the evening at about 9pm I had my first shot (!) at giving myself the Clexane. In the end it was pretty simple – I barely noticed the insertion of the needle, though pressing the plunger down was a bit unpleasant, though bearable. You can see how I got on here: . If you’re looking at the emailed version of this post I think you’ll only see a still shot of me giving myself the Clexane injection. If you want to see the video, you’ll need to follow this link to watch the video.

Shortly afterwards I also took my first dose of thalidomide (just popped another capsule). I’ll be interested to see how this pans out, as the dexamethasone steroid is an upper, but the thalidomide is known to cause drowsiness (a downer), so I’ll have to see which one wins. However I’m also told that the tiredness from the thalidomide is a cumulative effect so I probably won’t have much of that yet. At any rate, I was still wide awake at 1am this morning (and watching “Das Boot” on TV)…

Spurred into action by my recent experience of struggling to run what used to be a pretty easy pop-out-at-lunchtime distance for me, I went out for a ~30 minute jog both days last weekend and on Tuesday this week I went out for my usual ~5 miler from work. None of them were very easy. I think I am certainly a bit out of practice, which doesn’t help, but I think that the more significant factor is the reduced performance of my cardio-vascular system most probably attributable to the amyloidosis. It just feels like the oxygen isn’t getting down to my legs like it used to and the urge to stop and walk sections is very strong (and I typically do several times). I notice that I’m very sensitive to the gradient – anything at all uphill is very hard to sustain. Anything even slightly downhill feels pretty good and I feel I could maintain that for quite long distances. Notoriously difficult to find jogging routes that finish where you started that are anything over 50% downhill though 😉

I have an appointment next week with the cardiology consultant, so it’ll be interesting to see what he has to say, especially as when I last saw him back in May I didn’t feel that my condition was affecting my ability to run to any significant degree.

For the time being I think I just need to keep getting out for jogs as often as I can. I have found that a run is easier if I focus on exaggerating my breathing in the first section, whilst the body warms ups and gets going. The strange thing about the oxygen-isn’t-getting-there experience is that I’m used to doing this to myself intentionally, and in the past my heart and lungs have responded by just pumping harder, but now it seems that my breathing rate and depth increase though not to the extent I feel they should if my legs are requesting more oxygen. That’s weird / annoying as I can breath harder if I intentionally choose to do so, and it helps, but I don’t seem to be triggering this response automatically. Practice, practice, practice.

Here’s an example of what I used to be capable of, back in my fit, child-less, illness-free days in Hamburg, taking part in the sprint distance of the Hamburg triathlon (0.5km swim/20km cycle/5km run). If I recall correctly I knocked this one out in just over an hour. Wow… how times change. Something to aim for for next year maybe when this treatment is behind me?

Clinic day on Tuesday. Got to see the consultant, Dr Jenner again, which is always a mixed blessing. It’s good to be seeing Le Grand Fromage, but it generally seems to mean that there’s an issue to discuss. At the end of the 1st and 2nd cycles I saw the specialist nurse and the registrar respectively, when it was just a case of checking that I was coping with treatment OK.

The issue to discuss this time was that there hasn’t been a measurable decrease in my lambda light chain protein levels yet. Although the general protocol is to wait until the end of the 4th cycle to change drugs, and the fact that the high levels of these proteins means that the assay which is used to measure them is struggling to give an accurate value, the consultant suggested that we tweak the drug mix now (“we“? yes, it’s nice to think that it’s a cosy joint effort we’ve got going – obviously the reality is that he tells me what he thinks and I nod and do it).

So starting from the 4th cycle (beginning on Friday 12th October), the plan is to replace the cyclophosphamide with another drug which you may have heard of – thalidomide. Despite its awful history in connection with being used as a treatment for morning sickness in pregnant women, thalidomide has in fact recently become a fairly commonly prescribed, and apparently effective, treatment for multiple myeloma. Taking the thalidomide is pretty straightforward – it’s in capsule form. So my new chemotherapy combination will now be “VTD” (Velcade/Thalidomide/Dexamethasone). I still need to go up to the hospital on Friday mornings to have the Velcade administered intravenously (although there is some discussion about switching to an at-home administration from the next cycle), but I can just pop the thalidomide (as I did with the cyclophosphamide) at home.

The only additional complication with the thalidomide is that there is a slightly increased risk of blood clots occurring, so I’ll need to take something called Clexane (enoxaparin sodium) daily to combat this. Clexane is administered by subcutaneous injection, so I’ll be injecting myself daily. Not quite sure what that’s going to be like – I’m getting very used to needles being stuck into me, though up until now it’s always been someone else doing it. Still lots of (e.g.) diabetics manage it, so hopefully it’ll be OK.